Opportunities For Input
At various points in the ICER process we publish draft documents. We invite patient organizations to contribute your thoughts and perspectives on our work. We solicit public comments at two main points in our process — the Draft Scoping Document and the Draft Evidence Report.
Our Ongoing Assessments
- Metachromatic Leukodystrophy
- Paroxysmal Nocturnal Hemoglobinuria
- Pulmonary Arterial Hypertension
Respond to Our Work Guide | This guide explains how you can review and provide feedback on the different draft documents published by ICER. Learn about the process for public comments and what type of feedback is most helpful.
Share your lived experience | Complete our Share Your Story Form
Talk with us | Contact Catherine Koola, ICER’s Director of Patient Engagement at firstname.lastname@example.org
What Is The Draft Scope?
Listening to your concerns helps us understand how to structure our report. We look for feedback on:
- What kinds of populations are most affected?
- What kind of health benefits or side effects matter most?
After reviewing all of the public comments, we update and post the Revised Scoping Document.
What Is The Draft Evidence Report?
The Draft Evidence Report includes ICER’s preliminary research and analysis on the new drug or health intervention, which we publish halfway through our review. This report includes background information about the disease, insights from the patient community, preliminary results of the clinical and economic analysis, and other pros and cons that we’ve identified through conversations with patients and physicians.
At this stage, you can also nominate yourself or another patient advocate to speak at the public meeting – just email email@example.com with your request. Unfortunately, not everyone can speak at the public meeting. We will try our hardest to accommodate your request
How To Respond To Our Work
How Do I Submit My Public Comments?
- Email comments to firstname.lastname@example.org.
- Please submit as an attached Word document in the following format:
- 12-point Times New Roman font
- Draft Scoping Document: Three page maximum (not including references or appendices)
- Draft Evidence Report: Five page maximum (not including references or appendices)
What Type Of Feedback Is Most Helpful?
- How has your disease/condition affected your day-to-day life (physical, emotional, or otherwise)?
- What is your experience with current treatments? Where do you receive your care?
- What is your experience with accessing and affording current treatments?
- What are your hopes for a new treatment?
- How has your disease/condition impacted your family and caregivers?
- Most challenging symptoms
- Activities you find difficult or unable to do
- Changes you have made to your life (e.g., stopping education, leaving career, choosing not to have children)
- Specific ways current treatment is helping you; specific side effects or ways current treatment is making your life more difficult
- Type of medical center and medical professional that provides your care
- Issues with getting care (e.g., transportation, needing to take time off work, paying for treatment)
- Unexpected costs or issues with insurance coverage
When Can I Respond?
Once the Draft Scoping Document or the Draft Evidence Report is released, we want to know your thoughts. We usually provide a three-week period during which anyone can provide public comments in written form. The comments that recommend an alternative approach or provide constructive criticism are most helpful as we revise our scope and our report.
Please know that any comments you submit to us will be posted publicly on our website, and we will also respond with our thinking on the issue.
For the Draft Evidence Report, we respond to your comments when we publish the next version of the report (called the Evidence Report).
What Happens After I Provide My Feedback?
First we review your feedback. Then, we incorporates feedback (as appropriate) into our scoping document. Finally, we post the revised scope.
Draft Evidence Report:
First we review your feedback. Then, we incorporates feedback (as appropriate) into our report. When we post the revised Evidence Report, we also post our responses to all the public comments that were submitted.